Mom had a mini stroke about 4 weeks ago and has declined since then. She fell this past week, landed in the ER, but had no broken bones or concussion. But she is weak, thin, and cognitively declining. She is in stage 5/6 ALZ. She has been falling an average of once a month for the past three months. Assisted living is doing everything they can to help, but they obviously can't prevent everything. She was getting physical therapy, but the therapist is thinking about dropping her as a patient because she has little motivation to participate, and they are having a hard time getting her to go to physical therapy (she is in assisted living.) She is usually in bed sleeping whenever I visit. The one therapist told me she is beginning to show signs of "failure to thrive." My dad also has Alz and is in the same stage as her. He is extremely anxious when she is gone (at the ER), so when she passes away, I believe he will too. Any thoughts or suggestions. It's heartbreaking to watch their decline.
I had literally called the funeral home where I’d pre-paid for her final care, (my husband and I were living within total quarantine), and then contacted her nursing staff and literally BEGGED them not to hospitalize her unless her situation became so extreme that she was totally unable to be made comfortable in their care.
They complied with my request. Her symptoms were horrifying, but they were able to manage her care, over the acute stage and into the following period of about 4 months when she was still Covid positive but asymptomatic, and by September we were once again able to visit and enjoy her company.
On our first outdoor visit she recognized me and spontaneously called me by name, and although she had been significantly depleted, she continued from there to be able to enjoy the comfort of familiar faces and I could tell her in person thatI loved her dearly and would “be back soon”.
Whether I’d been “right” or ‘’wrong”, I was at peace with the decision I’d made.
You Forsuchatime, and I, had NO GOOD CHOICES. I found out all I could, spent time thinking about what I could do (basically nothing), but whether she’d be more content with the familiar faces of the dear folks who’d cared for her and whom she knew so well, or the masked anonymous caregivers she’d have encountered if she’d been hospitalized.
You care deeply about 2 very challenged people. You are sensitive to their needs, have done all you can, and are considering a humane and rational decision.
Be at peace. Nothing you decide will be “good”, but whatever you decide now will be “RIGHT’.
HOSPICE CARE FOR BOTH
its hard for dad to miss her, so don’t take her… POLST
GET IT FOR BOTH.. their doctors will talk to you about it
do what feels right for you and parents…
Life is hard and the choices at the end are difficult..
I lost one parent years before losing the other…
then it feels like a balancing act… all the pieces seem to just drop…
And now I talk to them.. they are up there… my angels.
You are looking at both of your parents… trying to balance… it’s okay… just know you are doing your best…
Just make them happy… if you can play music, dance, dance with the hands. Enjoy their presence. Make them feel happy, smile… laugh, remencse talk about the fun times…
Be happy in the moment… with them.
too stressful? Then decide to say no to ER visits…
POLST IT
I can't imagine having two parents with dementia. Yikes. My dad passed at 73 the day after having a stroke. So young, but he would have been miserable if he had been debilitated from a stroke. Very heartbreaking to watch our parents decline.
Do you already have POA for your parents? Do they have DNRs on file at the AL? I do with my mom because there is just no reason to want everything under the sun done to prolong an unhappy, painful life. It's OK to let nature take it's course.
They aren’t all the same and it’s important to make sure that you are receiving the best fit for your needs.
Time and time again, I heard from my mother’s nurses that they saw families waiting too long before they called hospice in.
Please know that hospice can be discontinued at any time if needed. Don’t hesitate to switch to a different provider if you aren’t satisfied with the one that you chose.
You can put this another way. All systems are aging. Everything has a life, from our electric toothbrush, to our own bodies. They fail in various ways as the systems run into problems.
Your Mom's own medical practioners are your best guides in all this. There is no prevention for it. It is something you work WITH, something you work AROUND the best you can, adapting the best you can.
I am so sorry. But know you are not alone. This is quite simply "what happens". I am 81, so both as an old retired RN, and on now a very personal level I can tell you "This is what happens". I wish you all the very best of luck dealing with things as they come along, the best you can. It is all any of us can do, because as dear old Dr Laura says "not everything can be fixed". And what can be fixed we try to patch up best we can.
I was going to try to get her assessed for LTC but it's tricky when they're not really profoundly ill and still mobile. With your Mom failing to thrive and getting out of bed less and less, maybe consider a discussion with her doctor to see if she'd be assessed for LTC -- which at least is covered by Medicaid. I wish you peace in your heart on this journey.
My husband had surgery on both of his shoulders and I saw how painful it was for him, plus the aggressive physical therapy that he needed afterwards. My mother would have never been able to endure that in her 90’s.
The solution for my mother was to participate in occupational and physical therapy which does help with the pain.
Not everyone is able to do physical therapy like my mother was in her 90’s.
At some point, everyone reaches a point in time when they are no longer able to participate in therapy. They generally go on hospice and wait for the end to come.
Our bodies wear out as we age. I know for a fact that mom didn’t want to live as long as she did. It’s sad when our quality of life goes down so far that it becomes a hardship to still be alive.
It broke my heart to see mom suffering with her Parkinson’s disease and her shoulder and knee pain.
Whenever she did express discomfort I knew that she was hurting because she wasn’t one who continually whined about being in pain.
I don’t think that I want to have the longevity that my mother had. I don’t deal with pain as well as she did.
Remember how their generation received gas to have babies? For one of us, the gas tank was empty, another one the gas tank was broken! For me, the doctor went to the wrong hospital, and the nurse delivered me. I can’t imagine delivering a baby without any anesthesia!
At this point they probably need to be in a nursing home.
Physical therapy is not going to do her any good at this point. I've had care clients where physical therapy insisted on coming when really they were nothing more than expensive company to the client. They are right to stop coming.
I've cared for many elderly people in the 'failure to thrive' stage. At that point it's pretty much about the three 'C's' at this point.
1) Comfortable
2)Calm
3)Clean
Your father's doctor should prescribe him an anti-anxiety medication. That will be a help to him.
You are probably right that your father will pass soon after your mother is she goes first.
The father of one of my friends passed away several months ago. He was only in his early 70's. Everyone thought his mother would go first. She was sick. She died three days after her husband.
There ARE situations I have heard of where the family chooses not to treat a break, but usually in situations where the patient is actively dying.
I was a caregiver for 25 years. I also did in-home hospice care for many years too. I have never heard of a person with a broken arm, leg, or anything else just being left as it is and not being set or tended to.
No one just leaves an injury as it is because a person is in hospice care.
A person still feels pain even when they are actively dying.
i suggested hospice before but you weren’t ready. It really depends on the amount of care they are receiving now. Usually with hospice you get a bit more and can stop with the hospital trips. Things like the fall could be assessed and x-rayed if needed right in her room at the ALF. No need to take her out and distress dad. And it’s nice to have a nurse you can discuss their care with.
This time is bittersweet in that they are tired but it is hard to let them go. Wishing you a peaceful night.
My mother had mobility issues due to Parkinson’s disease. She fell quite a bit too.
PT helps but if your mom isn’t able to participate then she doesn’t have a chance to improve.
It’s awful that both of your parents are suffering with this dreadful disease. I’m so sorry. I wish that I had words to help you.
All I can offer is to welcome you to the forum and encourage you to share whatever you want to.
We have all had our share of heartaches and can empathize with the difficult emotions that you are feeling right now.